coco

Hi all, something has had me puzzled for a few months now...my dd has been on abx (augementin, zithro, now back to augmentin) for 5 months now, and she has undergone 4 ivigs, first with Dr. K., and since then monthly with Dr. B. For the past several months she seems to have had the "sniffles and sneezing" or an "almost cold" without the wiped out for a day or so feeling that usually accompanies a cold. No fever. She has also had/has some reddish cold sore looking sores on the end of her nose (but no blisters or oozing), in her nose and right under her nose. This sort of comes and goes, but every time I see it getting redder I wonder, "what IS this??" I have sent pics of it to Dr. K, who thought it was may be "viral impetigo" -- Dr. B never saw her when she had it, but he thought it could be cold sores...I thought cold sores always came around the mouth and blistered? Anyway, my question is, could this be a sinus infection -- but she's been on high abx and ivig for 5 months, should she be having this recurrent problem?? Dr. B says ivig will take care of viral issues, Dr. K says ivig will not. What is your experience and advise? My daughter goes for ivig #5 in early January. Thanks everyone.

I would also add a steroid burst to see if that helps alleviate symptoms -- either a 5-day or 30-day trial. Good luck.

My dds former allergist. He went to a medical conference where Sue Swedo was a speaker, and that prompted him to mention Pandas to us....after 5 years of seeing him!!!!!

Interesting discussion about inisitol. When my dd's allergist first even mentioned Pandas early last spring, the neurologist he's in partnership with recommended inisitol right off the bat. He said it was very effective in healing the immune system and told us a story about a cancer patient who was given a short time to live, but was given inisitol (IP-6) and it lengthened her life by almost 5 years...at least that's the story. My uncle who has bone cancer is also taking it as it was recommended by the Mayo for it's immune boosting properties. So in both those cases the docs obviously thought it was helping the good cells vs. bad cells. It is a bit confusing, though. I think I might start giving it to my dd again...we got away from it after we got onto abx and ivig later this summer. coco

Worried Dad - Yes, I think that pupil dilation is related to sensitivity to light. My dd has complained of "too much brightness" on the bus, or outside on the playground (esp with snow) and direct sunlight on the porch, etc. She notices the brightness when my dh and I never even notice. It seems to come and go, but she is definitely talking more about it in the past several weeks.

My dd had a horrible headache exactly one week to the day post ivig, bad nausea as well. Lasted about 6 hours. This only occurred after the two-day IVIG with Dr. K. Monthly doses (one-day) give her no side effects. Doctor always tells me to keep her well-hydrated before and after IVIG, and I try to comply.

Coco, Month to month makes sense. Its the only way to survive. Mom's are so much with their dd's that we notice each slight set back. My husband helps keep me grounded by reminding me how far she has come over the last 7 months since her relapse on May 5th. I even know the day, it was that sudden and that severe. So I know our kids are diagnosed with CVID, and I need to consult Dr. B about dosage and timeframe. My kid is getting regular CVID treatment, maybe a slightly higher dose than our immun doc would give just becuz she knows my childs history. Does Dr. B think that becuz your dd doesn't create an immun response (flu like symptoms) from each infusion that she needs more??? Or is it because she can handle more he wants to give more? Nevergiveup, My dd in addition to pandas was diagnosed with Selective Antibody Immune Deficiency, which he feels strongly should be corrected with monthly ivig. She does not create an immune response, so that should hopefully fix the problem. Additionally, I believe he feels that as long as the child is tolerating (no adverse side effects) from the dosage, he is willing to increase it based on behavioral symptom improvement as each 30 days pass, or lack of improvement. We will run some new blood work on her after the next session to see how she looks then. When the dark circles under her eyes disappear I will do the JIG! Someone who posted after this note (sorry, can't remember name right now ) has a question about why Dr. B proposed ivig so quickly after PEX. I asked him the IVIG vs PEX scenario questions and he explained that even if you do PEX, which completely cleans the blood of all bad antibodies, you need to add in good antibodies with monthly ivig. Hope that helps. coco

Yes, Dr B. is amazing. Just got off the phone with him a few minutes ago and he reviewed where we are with my dd (just did ivig #3 yesterday) and we will probably up the gamma dosage for our next sessions. FYI, there's a publication here in CT called CONNECTICUT MAGAZINE and they had the annual TOP DOCS issue, and Dr. B made the list, again...he had it in 2001 as well. So glad to hear of your experience with him.

I would strongly suggest to your friend to make the trip to see Dr. K. In the meantime you can consult with him via phone and decide the next steps. If there is even a chance that these kids have pandas, (which the cunningham tests certainly indicate) they get can treated and can get better. It can change the course of their lives and your family. My dd was diagnosed with pddnos (not really meeting criteria, but had to put something down in order for her to receive services at school) at age 5 she is now 9 and this spring we were on the pandas trail...FINALLY! She has received steroids, abx and ivig treatment and is doing much better...rough road, but I will take that versus the other diagnosis. (PM me if you like and I would be happy to speak with you or your friend.) GOOD LUCK!

So, what did you all think? coco

Well, whatcha say we start with DNASE, ASO TITER, AND CUNNINGHAM'S CAMK tests??? I wish some doctor would have suggested those years ago. Am I speaking another language? How are we finding out our kids have pandas now??? I am saying that if your kid is acting bizarro, and before you "accept" those other diagnosis, why not do some blood tests? And as we know, nothing is 100% except death and taxes, but I think we all get the idea here.

Hi Laura, and welcome. I am sorry you and your family are going through this. My advise is to not accept the diagnosis of ASD at all. These days it has become a garbage bucket of symptoms that has no other answer. It sounds like your son has something they have labeled "regressive autism" which is a fairly new term and now sadly all too common. I believe much of it is all immunologically related, hence pandas, not the "autism" like doctors saw maybe once in their careers. You are in good hands with Dr. K. Try to keep in mind that your little guy has been battling this a long time and it will take a long time to fix, but I believe he can improve greatly with the right treatments. You should push to get him on augmentin or azithro for at least several months to see what happens. You can also pursue the ivig option down the road, but I, personally, would be as aggressive as possible to help your little boy. My dd was misdiagnosed at age 5 with pddnos, (had some symptoms since she was a 2-3 years old, although she never met the criteria fully, just glimpses and tendencies.) Then after illness after illness symtoms became much worse, with horrible new things cropping up all the time, until life in the home turned unbearable. at age 8. She is now 9. When we finally got confirmation of Pandas we immediately got 2-day ivig with Dr. K, high-dose abx and she is currently undergoing monthly ivig locally. My daughter is 6 months along since we have started to treat it. We have seen great improvement, but have rough days and a long road ahead. But given a choice I would pick healing Pandas rather than accepting the diagnosis, or misdiagnosis, of autism for my child. All the people on this forum are a great resource, I would be lost without them! Again, welcome and a big hug to you. coco

One more thing: Diana Pohlman would be GREAT to speak to this on a national level...she has been the reverend mother for so many of us!!

One thing I was thinking about and talking to my husband about last night --- late --- after too much internet....but regarding the segments on sneezing girl: We feel that just about any publicity that gets shown to Pandas is great, especially since there has been like, how you say, NONE? for so long...however, perhaps in the short run here we can have a very severe case of a child with Pandas, complete with hand-licking, verbal tics, motor tics, OCD issues, sensory issues, anxiety disorder, etc., really in the spotlight to show families and other parents that this disorder is so seriously and deeply multi-faceted and there have been cases, perhaps millions, that have gone undiagnosed or improperly diagnosed, taking the parents on a totally different road in life...to a life of special education, anti-psychotic meds, hospitalizations, institutionalization and more. The investigative reporters should perhaps focus on the toll these children take on our school systems, when not correctly diagnosed...we all know that there are more and more children requiring special services than ever before. I am not saying that it's all due to pandas, but how many are due to undiagnosed pandas? I believe that TV docs ought to be saying "If your child has been diagnosed with ADD/ADHD, OCD, Anorexia, Tourettes, or ASD spectrum, these are the three simple tests you need to have your child undergo to rule out Pandas first." This is life changing. Beth Maloney opened the door, but it needs to be kicked in, and ALL options for healing where there is disagreement or not on the protocol, steriods, advil, ABX, IVIG, PEX, should all be on the table. I hope that the sneezing girl does not go the way of the "hiccupping girl" or the man who took too much collodial silver and turned blue, but rather as another way to get the debilitating story of pandas out. Let's get some parents and kids on tv to talk about the YEARS they have been battling this "thing" and all the ways it can present itself. Sorry for the long post, I am not trying to stir the pot here, just adding my 2 cents, and I wish each and everyone of us heartfelt best wishes for a full recovery for their kids and families as quickly and effectively as possible...the ones with a few symptoms for a short while, and even more poignantly...longtimers. Each story is precious! coco PS. I decided to copy this onto this thread...if Lynn (Lauren's mommy) is reading this, do you know what other, if any, more attention the media you are in contact with are planning to focus on regarding Pandas? I would be great to get some parents up there with you whose child is very severe pandas (long time) and can open the aperture on the vast array of symptoms many are enduring.

Yes, my husband and I saw it, too...it ran about 2 hours along with other ticker info, and it clearly spelled out P A N D A S (Pediatric Autoimmune Neuropsychological Disorder Associated with Streptococcus) -- ALL the words! I believe it was referencing the sneezing girl diagnosis. My husband was casually watching tv while eating and brought my attention to it, and I literally had goosebumps seeing it run over and over. I would have never believed that 6 months ago. This is beginning to get more attention and it's great. Fox and Friends also had a brief report on it early in the morning yesterday, but sadly, Gretchen Carlson pronounced it "Phaaandas" (like the same way you'd say the "a" in the word "farm") -- I yelled at the TV saying, PANDAS!, PANDAS! -- like the bear!!! Ugh! But at least it was brought up. One thing I was thinking about and talking to my husband about last night --- late --- after too much internet....but regarding the segments on sneezing girl: We feel that just about any publicity that gets shown to Pandas is great, especially since there has been like, how you say, NONE? for so long...however, perhaps in the short run here we can have a very severe case of a child with Pandas, complete with hand-licking, verbal tics, motor tics, OCD issues, sensory issues, anxiety disorder, etc., really in the spotlight to show families and other parents that this disorder is so seriously and deeply multi-faceted and there have been cases, perhaps millions, that have gone undiagnosed or improperly diagnosed, taking the parents on a totally different road in life...to a life of special education, anti-psychotic meds, hospitalizations, institutionalization and more. The investigative reporters should perhaps focus on the toll these children take on our school systems, when not correctly diagnosed...we all know that there are more and more children requiring special services than ever before. I am not saying that it's all due to pandas, but how many are due to undiagnosed pandas? I believe that TV docs ought to be saying "If your child has been diagnosed with ADD/ADHD, OCD, Anorexia, Tourettes, or ASD spectrum, these are the three simple tests you need to have your child undergo to rule out Pandas first." This is life changing. Beth Maloney opened the door, but it needs to be kicked in, and ALL options for healing where there is disagreement or not on the protocol, steriods, advil, ABX, IVIG, PEX, should all be on the table. I hope that the sneezing girl does not go the way of the "hiccupping girl" or the man who took too much collodial silver and turned blue, but rather as another way to get the debilitating story of pandas out. Let's get some parents and kids on tv to talk about the YEARS they have been battling this "thing" and all the ways it can present itself. Sorry for the long post, I am not trying to stir the pot here, just adding my 2 cents, and I wish each and everyone of us heartfelt best wishes for a full recovery for their kids and families as quickly and effectively as possible...the ones with a few symptoms for a short while, and even more poignantly...longtimers. Each story is precious! coco

THANK YOU for that post!! It really gives me encouragement and I am thrilled for your son!!! coco

Good point EAMom...I can only speak to what he used for my dd. Perhaps he varies it in certain cases. I wonder how these doctors determine what is the optimum/safest way to determine dosage amounts...anywhere from 2.0 - 1.0 - 500 mgs...no "standardized" protocol. Maybe someday.

I think you should leave your post "as is" -- is it from the heart and your truthful experience. I value that so much, and honesty on this forum is gold. How else are we going to sort out the boobs from the keepers? Speak without fear, I applaud you!! coco

Dr. K uses 1.75 grams per kilo over 2 days...we did it with him in August. My daughter's monthly dosage is 1.00 grams per kilo. I wish you all the best and keep posting!!!! coco

Thank you all for your feedback and support. My dd has had 2 monthly infusions with Dr. B so far, and her next one is on the 9th. Yes, I do see a huge backslide the following day after the infusion and lasts about 3 days also. It's like everything gets stirred up again. Maybe this is just the pattern I have to get used to. Then she seems quite a bit better, but there are those days...ugh. Sunday we had company over for dinner and I just knew it was not going to be a good night for my dd. Sure enough, I was right. All she kept talking about was "giving the dog a bath" over and over. High anxiety and this weird arm pointing thing I had never seen before. Lots of irrational fears - me turning on the ceiling fan, a bracelet, the red nailpolish on my toes--she prefers it when I wear shoes. These come and go with varying intensity. I was complaining to my husband that we should have done pex, then ivig, because this is taking forever!! Beginning after school yesterday she came home, no issues, did afterschool stuff, homework and we were all holding steady. This a.m. she was great, good mood, happy, nice and "normalish" and hopping on the bus with a smile. It's the inconsistency that is so hard to watch, and for her to suffer through. My concern is that because she has had this so long we will always be living with a certain level of dysfunction which will preclude her from living an independent, normal, rich life. Dr. B. has had one older child (14ish) who comes every month that I know of. He is about 98% better, the nurse tells me, but I do not know how long he has had Pandas. I must remember to ask him about other patients. My hope is that all the Pandas parents whose children have healed no longer post here, because they want to forget this ever happened. coco

Are there any parents out there whose child has had Pandas for a very long time, 5+ years, that was not correctly diagnosed or misdiagnosed as PDDnos, Tourette's, etc. and did not get proper treatment, i.e, abx, ivig, pex until many years later? How are your kids doing? Are they "healed" after treatment and such a long time of non-treatment? The reason I am asking is that my dd was misdiagnosed with Pddnos at age 5 (had symptoms long before that), and just this past summer we figured out it was Pandas. She is now 9. Now that we know what "it" is we are all over it and are as aggressive as possible. We have done IVIG with Dr. K., doing monthly IVIG with Dr. Bouboulis and are on high-dose abx. We are seeing many good things, but the backslides are really tough and I every time I see my dd live through one I am convinced this is all not going to work get very worried that she can't pull all the way out of this. I know, I know, I have to be patient, but it is gut-wrenching to watch this as it feels like whatever recovery we are having is in slow motion. Are there any long term pandas kids that are healed and if so, how long did it take and what treatment worked best? Sigh. I think I need a pep talk here. coco

Jack, I wish your family was here with my family at our Thanksgiving table. All the best to you and keep us posted. And I would like to add my "thanks" for all of you dear people on this forum, my internet soulmates. Wishing you all peace and strength as we all move forward. Hugs, Coco

Judy, I am so sorry for your experience...I am proud of you for hanging tough, and I would certainly take my business elsewhere! That is totally insane! I would hop on a plane and see Dr. K in a heartbeat. He was able to get roughly 80% reimbursed for us over several months, so that was worth it all by itself. You need a doctor who is a partner, not an adversary for crying out loud! Big hug to you!! coco